Hello

[cbrooke]

Hi! I'm Brooke, and I've been diagnosed with WG for about 3 to 4 months now. It seems like a long time, but for me it's not so much because most of the beginning was a mixture of confusion and denial. I'm only 21 years old, so finding someone close to my age to relate with would be amazing. I'm open to insight from anyone really, though. I don't really have anyone to talk to about this because I don't want to bring it up all the time with my friends, and I feel like it just freaks my family out. My story is rather long, so I decided against posting all of that on here. Plus, I really don't want to seem like a whiner. So... yeah. That's really all I can think of to say right now.

[pberggren1]

Brooke, it doesn't matter how you seem you sound when you tell your story. Bottom line.....we want to get to know you. There are other young people your age on here. Facebook also has groups for Wegs and Vasculitis with young people on there as well.

[annekat]

Hi, Brooke, and welcome to the forum! We'd like to hear as much as you'd like to tell us about your WG experience. Sometimes writing it out helps to clarify it in your own mind. But it doesn't have to be all at once... you can start different threads on the different aspects of what you've been going through. And venting or ranting is always encouraged on here, too, if you feel like it.... I don't think anyone will call you a whiner. I think most of us have whined at times. It's a common tale that friends and family are hard to talk to about this, and here you will find people who have been through the same things and understand. I hope some of those around your age will notice you are here; if not, then you can start a new thread with something in the subject line about the age group you are seeking. The Facebook groups are great, too... I didn't know there was one for younger Weggies, but I've joined about 3 others and really enjoyed the exchanges with people there about all kinds of things including WG and life in general.

[lag713]

Hi Brooke! Welcome to the group. I'm sorry you've been struggling with this for the past few months but I hope you're able to find the support you're looking for here. I'm 26 so I have a few years on you but I can relate. There are a few more young women on the forum as well. You're not alone!

I understand if you don't feel like sharing your story just yet. Sometimes it feels like writing it out is accepting it and you may just not be ready for that yet. I found it to be a bit cathartic. Friends and family had heard bits and pieces as things developed but it was nice to lay it all out. My husband really stepped in to help me through this challenging time. My friends have had trouble understanding but provide tremendous support. My family do not understood very well and are a bit slow to come around. It's tough when you look fine on the outside. Just as it is taking you time to come to terms with it, it will likely take them some time to understand. Even another weggie may have similar experiences and can provide advice but they may not really understand what your personal experience is like.

Feel free to send me a message if you want to chat about anything. I'm also new to wegener's (symptoms started 6/2013, diagnosed 1/2014).

[LisaT]

Hi, Brooke, welcome! I'm more than twice your age, but in my head still think I'm 21. Does that count? Lol. I actually wanted to say that although I'm just now in the process of confirming a diagnosis of WG, I had similar issues and another autoimmune disease in my 20s, so although the experiences are different I can somewhat relate. This is the best place to vent. It's not whining at all. You get great advice and support here. When you're ready to share more details, people can give you detailed/specific advice, which I find really helpful. I tend to dive right in, but it sounds as though most like to read a lot and get their bearings and then join the discussion gradually. I look forward to getting to know you.

[windchime]

Welcome to the forum Brooke. Sorry you have to be here, but an excellent place to be if you have this disease. As you can see from the above posts people here are very loving, supportive and knowledgable. Please share your story when and if you feel like it. We will not judge you. Feel free to rant and/or share anything. We are a very diverse group from all over the world. So you will find someone on here 24/7 if you find you need to talk to someone. Keep us posted and feel free to post when the mood strikes you.

[cbrooke]

Wow. I already feel extremely welcome! I've never really been one to open up about myself, so I guess that's why I was so hesitant to give out details. So my story... I've been struggling with symptoms of WG for a couple of years now. My only symptom is a narrowing of my airway, so it took a long time to come to this conclusion. Initially, I just thought I was getting out of shape, then when I went to the campus doctor he thought it was bronchitis. When the treatment for bronchitis failed, we treated it for asthma. The treatment for asthma continued for over a year. My mother is a respiratory therapist and my father is a doctor, so we tried to handle it ourselves. When I was still getting worse, my parents decided it was finally time to see a specialist. I went to both an ENT and a rhuematologist. They both suspected WG right away, but were unsure due to the fact I lacked so many symptoms. After the blood tests came back positive, they scheduled me for a Rituxan treatment. That, other than the high dosage of Prednisone, is all we've really done at the moment. I don't know if it is normal, but this whole process seems to be going by so slowly. I've been going to the doctors for months now, and I'm still barely any better off than I was before I went in the first time. I apparently am supposed to get another round of Rituxan to hopefully open up my airway more before they go in and perform surgery. I'm so ready to be off the Prednisone because the side effects are rather unpleasant, and I'm ready for my life to go back to semi-normal. I'd like to be able to hang out with my friends and not have to worry about whether or not I am physically able to do whatever they have planned or walk to class or anywhere for that matter without losing my breath. I'd also like to do those random things on a whim that most people my age do. For instance, my birthday just passed and I wanted to get my ear pierced because I've been dying to do it for years. I opted out of it because I don't know how my condition or my medication would effect it. I also worried about whether or not I can drink alcohol. I'm not a huge drinker, and I've been very good at taking it easy when I do drink, but who wants to worry about the number of drinks they can and cannot have on their 21st? The internet doesn't really give the answers for questions like these which isn't surprising. I probably shouldn't be looking online for the answers anyway. However, I found this site because of it, so some good did come out of it. Finally, I used to be a runner and a tennis player, and I am unable to do both now, so I'm taking that a little bit hard. I guess you could say I'm on the hunt for a new hobby.

[LisaT]

Brooke, I'm so sorry you can't be carefree right now and do all of the fun things you should be doing at your age. It's not fair. I hope you feel better soon and can get back to closer to your normal life (your new normal). There is a whole thread on hobbies the past few days, you may get some ideas there. My first suggestion is to do whatever you have loved to do in the past, but slower or a bit more carefully (instead of running, can you go for a walk? Etc...) hopefully your friends will accommodate you. I too have a narrowed airway and am still trying to figure out what the plan is. There's a whole board on this issue that you've likely seen but just in case you haven't, look under tracheal stenosis (narrowing further up in your airway is called subglottic stenosis, but that's covered there too.) I feel the same way about the lengthy process and waiting... I look forward to hearing what the veterans have to say. Hang in there! Although I'm new to WG or at least the label (I've had symptoms for years), I've had chronic pain and another illness (rheumatoid arthritis) for a while, and I find that if I don't open up, I feel very isolated. I've started opening up a bit more to the world at large (I use to not even tell anyone I was sick), and sharing more details with close friends and family who care. I'm sure it's much harder when you're so young and your friends are not generally dealing with health issues; so I'm not saying you should necessarily do as I do, just sharing what I've noticed. To me it has been a relief to talk more.

Finally, I was glad for your sake to hear about your parents' professions and expertise. I hope that helps you to feel safe and in good hands. Man, I wish I had a respiratory therapist and a doctor under my roof!

[annekat]

Brooke, I enjoyed reading the story of your Wegs. You're lucky not to have multiple involvements at this point, e.g., sinus, lung, etc., but not lucky, from my point of view, to have the narrowing of your airway. That would be a hard one to deal with. I know there are others on here who can give you more support for that because they have more knowledge and experience with it.

Just a couple of things: I don't really see why you couldn't get your ear pierced. It is not that big a deal and not very invasive. However, others may disagree. If you said your nose or your lip, I would have a different answer. And as for the drinking, you are not on methotrexate (MTX), which is the only drug I've heard of on here that comes with a warning against alcohol. You are right to keep your drinking in moderation, as to do otherwise would be bad for anyone's health. But I think you should go ahead and live it up on your 21st birthday. That is just MY 2 cents worth. I have not had RTX so can't comment on that.

I hope that with proper treatment you will be able to resume some of your physical activities before too long!

[MaxD]

Brooke,

It is best to avoid alcohol while on prednisone, you are doing right by yourself. While it may be little consolation now, you have a long life ahead of you and many opportunities to enjoy life, including alcohol at the right time. Hang in there! You do have company.